re: Update - Tube out today!!!

faithheals09
faithheals09 Member Posts: 19
edited March 2014 in Head and Neck Cancer #1
Feeding tube came out today! I am so thrilled!!! I was four weeks out yesterday and I'll have to say that every week is that much better.
Taste buds not completely back yet but at least now the food doesn't taste awful, I can at least tolerate it enough to get it down. I am taking one day at a time. I know I could not have gotten this far with everyones help. You all have been my saving grace. So thanks for always being there for me!

God Bless you all.

Sandy

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Sandy
    I am so glad to hear you are doing well. Two things I always say go hand and hand God & Faith, for with out him we could do nothing. We may go through trials here on this earth but they are only getting us ready for when we finally go home. Our trials teach us two very important things, how much God loves us, and how ugly sin truly is.

    Your taste should start coming back little by little and so will a lot of things; they will all form part of the new normal you. God bless and take care of you in his healing shop.
  • Scambuster
    Scambuster Member Posts: 973
    #3
    Grit n Pull ?
    Hi Sandy,

    Congrates on getting your tube out. Curious if you went the 'Grit n Tug' or 'Anesthetic' route ?

    Glad to hear you are mending so well after just 4 weeks out. I hope you continue to improve and get most of your 'stuff' back to resume a good 'new' normal life.

    Regds
    Scambuster
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    Scambuster said:

    Grit n Pull ?
    Hi Sandy,

    Congrates on getting your tube out. Curious if you went the 'Grit n Tug' or 'Anesthetic' route ?

    Glad to hear you are mending so well after just 4 weeks out. I hope you continue to improve and get most of your 'stuff' back to resume a good 'new' normal life.

    Regds
    Scambuster

    Got mine out on the 23rd
    Good for you! It's a great psychological boost. You don't feel like a damn invalid anymore. You can pull a shirt on and off like normal people. Sleep in any position you want. Showers don't take forever any more. Your not afraid to get close to people and you can really hug. The stangest thing is that sometimes you will think it's still in. It's that amputee syndrome where you still think a lost limb is there. Congrats again.
  • fishingirl
    fishingirl Member Posts: 188
    #5
    ratface said:

    Got mine out on the 23rd
    Good for you! It's a great psychological boost. You don't feel like a damn invalid anymore. You can pull a shirt on and off like normal people. Sleep in any position you want. Showers don't take forever any more. Your not afraid to get close to people and you can really hug. The stangest thing is that sometimes you will think it's still in. It's that amputee syndrome where you still think a lost limb is there. Congrats again.

    Good for you!! Doesn't it
    Good for you!! Doesn't it feel like FREEDOM!! Mentally, it's a another step forward. And everyday your taste buds will improve. To wear everything actually tastes good again! Happy to hear.

    Cindy
  • delnative
    delnative Member Posts: 450 Member
    #6
    Bye-bye, tube
    And when people ask you about your scar, you can tell them that it's a bullet wound.
    And in a way, it is.

    --Jim in Delaware
  • GRAVEY
    GRAVEY Member Posts: 83
    #7
    Do you mean that you had
    Do you mean that you had your tube removed 4 weeks after your last treatment? If so, that is very encouraging. I hate and refuse to use mine with a passion. I drink Boost Plus vanilla for my diet, I squeeze in all I can tolerate regular food wise, which really isnt much, but Im trying. I figure though, if I refuse to use it, why cant I just go ahead and have it removed.
  • Landranger25
    Landranger25 Member Posts: 210 Member
    #8
    GRAVEY said:

    Do you mean that you had
    Do you mean that you had your tube removed 4 weeks after your last treatment? If so, that is very encouraging. I hate and refuse to use mine with a passion. I drink Boost Plus vanilla for my diet, I squeeze in all I can tolerate regular food wise, which really isnt much, but Im trying. I figure though, if I refuse to use it, why cant I just go ahead and have it removed.

    Good news Sandy
    I think for some people, me included, getting that tube out is a real morale booster. I knew it wouldn't go until I was eating on my own so that was all the motivation I needed to get moving. Gravey, keep trying to eat different foods. for me soup was the answer. My Onco said cream soups not too warm. First try couldn't do it but a few days later ate a whole can. (made with milk) from there for a week or 10 days couple cans of soup a day and then scrambled eggs. The more I tried the more seemed to work. like Sandy, I think it was about 4 weeks and the PEG was out. Good luck.

    Mike
  • Chefdaddy
    Chefdaddy Member Posts: 170
    #9
    Landranger25 said:

    Good news Sandy
    I think for some people, me included, getting that tube out is a real morale booster. I knew it wouldn't go until I was eating on my own so that was all the motivation I needed to get moving. Gravey, keep trying to eat different foods. for me soup was the answer. My Onco said cream soups not too warm. First try couldn't do it but a few days later ate a whole can. (made with milk) from there for a week or 10 days couple cans of soup a day and then scrambled eggs. The more I tried the more seemed to work. like Sandy, I think it was about 4 weeks and the PEG was out. Good luck.

    Mike

    Hi Mike and everyone else
    Hi Mike and everyone else here.

    I haven't started using my tube yet, I'm having all my teeth extracted in the next two days so I'm wondering if it would be a good idea to start using it while my mouth heals?
    Oral surgeons are supposed to be doing the procedure in the OR unless my insurance says no. They told me that there would be nothing but rows of stitches afterwards, so eating will be only liquids for a while. I'm to start radiation about 10 days later.


    Chefdaddy
  • Landranger25
    Landranger25 Member Posts: 210 Member
    #10
    Chefdaddy said:

    Hi Mike and everyone else
    Hi Mike and everyone else here.

    I haven't started using my tube yet, I'm having all my teeth extracted in the next two days so I'm wondering if it would be a good idea to start using it while my mouth heals?
    Oral surgeons are supposed to be doing the procedure in the OR unless my insurance says no. They told me that there would be nothing but rows of stitches afterwards, so eating will be only liquids for a while. I'm to start radiation about 10 days later.


    Chefdaddy

    I believe the longer you can
    I believe the longer you can eat "real" food the better off you will be. (I didn't use my tube until somewhere around chemo 2) The formula is good but real food is better. I used my tube to supplement my hydration after I learned my lesson in getting myself dehydrated. I also used it for nutrition for the time I had to do that but tried to get back to real food as soon as I could. I kept my teeth and tonsils in the beginning so didn't have to deal with what you are. My best advice, keep sipping and swallowing everyday. Do not let your swallowing muscles go without being used. (My Onco, "Whatever you do, don't lose your swallow") It will help you to feel better sooner after your trial if you can get back to real food. Good luck.

    Mike
  • faithheals09
    faithheals09 Member Posts: 19
    #11
    Hondo said:

    Sandy
    I am so glad to hear you are doing well. Two things I always say go hand and hand God & Faith, for with out him we could do nothing. We may go through trials here on this earth but they are only getting us ready for when we finally go home. Our trials teach us two very important things, how much God loves us, and how ugly sin truly is.

    Your taste should start coming back little by little and so will a lot of things; they will all form part of the new normal you. God bless and take care of you in his healing shop.

    Thanks so much! I could not
    Thanks so much! I could not have gotten through this without my faith in God. I know he was with me every step of the way. I am six weeks out now and taste still not quite there yet but I am being patient. I know healing takes time and I have all the time in the world thanks to my second chance in life. I could not be happier than I am now.

    God Bless you and thanks again for your posting.
  • faithheals09
    faithheals09 Member Posts: 19
    #12
    Scambuster said:

    Grit n Pull ?
    Hi Sandy,

    Congrates on getting your tube out. Curious if you went the 'Grit n Tug' or 'Anesthetic' route ?

    Glad to hear you are mending so well after just 4 weeks out. I hope you continue to improve and get most of your 'stuff' back to resume a good 'new' normal life.

    Regds
    Scambuster

    It was definitely Grit n
    It was definitely Grit n Tug! It was not a lovely site! My 22 year old son took me and he said he got week at the knees when he saw them just pull it out! The nurse then asked if I wanted to see the tube and I was like no way that is just gross! My son and I had a good laugh when we left.

    I am six weeks out now and I'll have to say every day is better than the last. I am truly blessed.

    Take care!
  • faithheals09
    faithheals09 Member Posts: 19
    #13
    delnative said:

    Bye-bye, tube
    And when people ask you about your scar, you can tell them that it's a bullet wound.
    And in a way, it is.

    --Jim in Delaware

    Too funny! But I love
    Too funny! But I love that!! Thanks for making me laugh!
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #14
    Chefdaddy said:

    Hi Mike and everyone else
    Hi Mike and everyone else here.

    I haven't started using my tube yet, I'm having all my teeth extracted in the next two days so I'm wondering if it would be a good idea to start using it while my mouth heals?
    Oral surgeons are supposed to be doing the procedure in the OR unless my insurance says no. They told me that there would be nothing but rows of stitches afterwards, so eating will be only liquids for a while. I'm to start radiation about 10 days later.


    Chefdaddy

    teeth
    Hi, Chef. How did the dental proceudre go? I'm so sorry you had to go thru that. How are you feeling? Are your children able to help you? How did it go in court? I pray that all went well for you and that you aren't feeling to bad. May God bless you and your family and always keep you safe.
    Deb
  • faithheals09
    faithheals09 Member Posts: 19
    #15
    GRAVEY said:

    Do you mean that you had
    Do you mean that you had your tube removed 4 weeks after your last treatment? If so, that is very encouraging. I hate and refuse to use mine with a passion. I drink Boost Plus vanilla for my diet, I squeeze in all I can tolerate regular food wise, which really isnt much, but Im trying. I figure though, if I refuse to use it, why cant I just go ahead and have it removed.

    Yes thats correct. Four
    Yes thats correct. Four weeks after my last treatment. I made a decision to force myself to eat even though food didn't taste too great. I hated the tube it was just so irritating to have. I did loose about 5 more pounds once I started to force feed myself. The doctor wasn't too happy about that but he said that if I promise that as long as I maintain my weight and not lose anymore then he would take the tube out. So far I've kept my promise.

    I know how frustrating the tube was but I'll have to say it really saved my life. I was at a point I couldn't even swallow it was just horrible. So hang in there it will get better for you and you will have the tube out in no time. Just whatever you do try not to lose a significant amount of weight when you completely stop using the tube or else your doctor may refuse to remove it. Good luck and please let me know how you are doing.

    God Bless and take take!

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